Working Together

Why is it important to ask for and accept caregiver help?

Caring for someone with cancer can be hard. As a caregiver, you are at increased risk of emotional, mental, and physical problems. You may feel stress, anger, anxiety, depression, fatigue, loneliness, and uncertainty. Some caregivers find it difficult to ask for help. You may feel embarrassed or like you’re imposing on others. But getting caregiver help is important—for both for you and the person you are caring for.

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When and how do I ask for caregiver help?

It is never too early to ask for help. If you can, ask before you need it. This has the added benefit of giving others time to plan.

Start by asking the person you’re taking care of to help you make a list of friends, family and anyone else who might lend a hand. Don’t overlook people you may not know well. People at your church, school or work may want to help. Next, call the people on your list, and ask if they are willing to pitch in. Even if you don’t end up needing their help, it will be good to know it’s there just in case.

Remember that many people do want to help, but don’t know what they can do. Tell them exactly what you’d like. For example, “Can you take Joe for a lab draw on Monday morning before 9am?”

What is a Caregiving Plan?

A Caregiving Plan lays out what needs to be done to manage the health and well-being of the patient. Unlike the doctor’s “plan of care,” the Caregiving Plan addresses mostly non-medical issues. A Caregiving Plan can help you line up outside help ahead of time, avoid schedule conflicts, improve communication, and reduce caregiver stress and overload.

How do we make a Caregiving Plan?

Prepare
Talk to the patient about the level of care he or she thinks will be needed. The person receiving care should have the biggest voice unless he or she is mentally or physically unable.

Pull your team together
Make a list of everyone who wants to help, including family members, close friends, health professionals, home care workers and others in the community.

Take stock of the situation
See the section below on areas you need to think about. Remember that the level of care needed can change. The person with cancer may only need help for brief periods of time like after surgery or chemotherapy. Or, he or she may need constant or almost-constant care. People who are not able to recover will likely need more help as time passes.

Make the Plan
Once you have put together your team, and considered the patient’s needs, it is time to sit down with all the players and put your Caregiving Plan together. The written Plan should include:

Take action
Make sure everyone has a copy of the Plan. Then check-in with each other regularly to make sure things are getting done. The care team should assign a point person for each area of care. This doesn’t mean that person has to do everything in that area—just that he or she is responsible for seeing to it that those tasks are done. As things change, be sure to update the Plan.

What do we need to think about when making a Caregiving Plan?

Physical health & medication

Is the patient able to see and hear well? Does the person need professional nursing care to manage wounds, drains, catheters or other medical equipment? Does he or she have other diseases that need to be managed like diabetes, high blood pressure, arthritis or emphysema? What medication is the patient taking? Does the patient need assistance taking medication or remembering to take medication?

Mental health

Does the patient have any mental health issues like depression, anxiety or psychosis? Should he or she be seen by a mental healthcare professional?

Everyday activities

Does the patient have problems with incontinence (inability to control urine or bowel movements)? Can he or she move around safely and comfortable? Can he or she dress, bathe, shave, brush teeth, wash hair, use a toilet, and use the phone without assistance? Can the person get help in an emergency, shop, prepare meals, do housework, yard work, and/or drive safely? Does the patient have any eating issues?

Home safety

Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? (Learn more about home safety.)

Finances

Can the patient manage his or her affairs, including paying bills? What is the patient earning and spending? What are his or her income sources (e.g. Social Security, pensions, salary, investments, etc.)? How long will his or her savings last? Are there any other sources of financial assistance? Where are important financial documents—like the car and home title and insurance policies—stored?

Insurance

What insurance coverage does the patient have? Medicare? Medicaid? Private insurance? Does the patient have long-term care insurance, supplementary insurance or life insurance? Does insurance cover "non-medical" personal care? Has the patient been told that insurance won't cover medical tests or procedures that the doctor has ordered?

Legal

Does the patient have a will, trust, advance directive, or living will? Have they signed a healthcare proxy or power of attorney? Do the primary caregiver and/or caregiving team have access to these?

Interests & lifestyle

What are the patient’s hobbies? Does he or she belong to a church or other faith-based group? Does he or she get out of the house for social reasons? Get visitors at home? Do family members live close by? Is there someone from the patient’s faith community that can drive them to services?

Why is it hard to talk with family and friends about caregiving?

Many caregivers find it difficult to speak with the person who is sick. You and your loved one are in this together, but your experiences and roles are very different. For example, the cancer patient may be frustrated that he or she cannot do more. And you, the caregiver, may feel stressed and overloaded because you have too much to do. You may have negative feelings but not want to burden one another. Both of you may be deeply afraid.

You may also find it hard to speak with family and friends about what you need in the way of help, and/or how you’re feeling. You may not feel comfortable talking about your own needs when you’re not the one with cancer.

Talking openly and honestly is a must. You have practical challenges that need to be handled, and feelings that need to be dealt with.

How can I better talk with others about caregiving?

Here are some tips for talking with the person you are caring for and others on the caregiving team:

Set aside time to talk. Find a quiet time without interruptions.

Ask if it’s a good time before you start a talk. Be clear about why you want to talk, and what you hope will come from it.

Try to avoid serious talks when either of you are likely to be tired like the end of the day or following chemotherapy.

Think about what you want to say ahead of time. You may even want to practice.

Use "I" statements like, "I have a hard time talking about this, too." Avoid using "you" statements, such as "You always..." or "You never...”

Speak from your heart.

Make eye contact. Try to have open body language.

Be patient.

Be calm when you talk. Try to not get angry or blame others for your feelings.

Summarize what the other person has said to be sure that you have understood.

If the other person seems to have misunderstood, try explaining what you meant with different words.

Allow the other person to talk. Listen and try not to interrupt.

Try not to hold back to protect one another’s feeling, and ask the other person to do the same.

Know that the other person may not want to hear what you have to say. And, know that you may not like what he or she has to say.

Don’t feel like things have to be settled after one talk.

Don't feel that you have to always say, "It'll be okay."

Remember that people express their emotions differently.

If you are having a hard time talking with the person you are caring for or others involved in caregiving, get help. Consider asking a licensed counselor, therapist or clergyman to mediate the conversation. Your doctor can suggest someone.

Talking may be hard in the beginning. But it will get easier if everyone is open and honest about their feelings.

What do I do when someone says something hurtful?

Some people may not know how to talk with you about cancer and caregiving. Their well-meaning comments may be hurtful. It is OK to feel hurt, angry or shocked. Here are 3 ways to deal with insensitive remarks:

Be straightforward and honest. Tell the person that the question or comment hurt your feelings.

Ignore the comment.

Answer questions in a general way to avoid further discussion. It is your right to share as much or as little as you want.

What are family meetings?

Family meetings can help you make sure that everyone understands the situation. Caring for someone with cancer is not a one-person job. You need others to pitch in. Even if they don’t give direct care, the time you spend caregiving may affect them. Meetings are a way to keep everyone informed and involved. Family meetings can be a good place to problem-solve and share opinions. Sometimes, doctors and nurses hold meetings to help the family understand the diagnosis and treatment.

Not all family meetings go smoothly. Feelings about the person’s cancer diagnosis and future, bad past relationships, and poor communication can get in the way. But the results can be positive.

Who should be at our family meetings?

Invite everyone who will be caring for the person with cancer, including family members, close friends, neighbors, and paid caregivers. Also think about including family and friends who live outside the area. There are ways for them to help from a distance.

A big decision is whether the person being cared for should be at every family meeting. On one hand, the patient needs to voice his or her ideas and concerns. On the other hand, family members and friends may not be as frank around him or her. If you don’t include the person being cared for, sit down with him or her before and after the meeting so that he or she stays in the loop.

How do we make our family meetings work?

Hold the family meeting at a neutral and comfortable place. This could be someone's home, office, a room at the doctor’s, or the phone.

Pick a time and place when you will not be interrupted. Ask people to turn off their cell phones or put them on vibrate. If small children will be there, have a sitter watch them in a different part of the house.

Consider having an “outsider” lead the meeting. A social worker, pastor, or nurse may be more able to keep the meeting on track.

Prepare an agenda and give it out before the meeting. Put the most important items first. For example, you may want to discuss:

Put a time limit on each item. For example, "We will talk for 20 minutes about money and then we need to move on to helping with housework." Ask someone to keep track of the time.

Prepare for difficult people. If you think some of the attendees might bring personal baggage to the meeting, talk to them in advance. If you have an outsider leading the meeting, give them a heads up.

Prepare for disagreements. The family may not agree on some things. If you can’t reach an agreement, decide to try it one way for a month, and set a time to talk again about how things are working.

Have someone take notes. The note-taker should write down decisions and assignments. Give everyone a copy of the notes after the meeting.

Make sure to assign people tasks they can do well. For example, ask the cheerful, scattered cousin to sit with the patient rather than review bills.

Remember that you can’t solve everything in one meeting. At the end of the family meeting, set up a time and a place for the next one.

Follow-up. When you meet again, start by reviewing the notes and decisions from the previous meeting.

Why is it important to talk with the patient's healthcare providers?

Please note: The patient will need to give permission for his or her healthcare providers to speak with you.

If you stay in touch with healthcare providers treating the cancer, you’ll likely have a better understanding of the disease and treatment. You’ll be better able to help the patient make decisions, and better able to anticipate his or her needs.

How do I talk with the patient’s healthcare providers?

Many people have a hard time talking with doctors and other healthcare providers. You may feel your questions are foolish or silly. You may be afraid that if you report too many things, the provider will stop treatment. You may not be sure who to ask about what.

Here are some tips on talking with healthcare providers:

Work with the patient to write down all the questions you both have.

Ask clear and specific questions. Be frank.

If the patient is able, let him or her speak first.

Take notes during the appointment, and/or ask for permission to record the conversation.

Repeat what you hear, and ask if you’ve understood what’s been said.

If you don’t understand what the provider has said, ask him or her to explain it to you again using simpler terms.

Ask for copies of doctors' notes. You have a right to this information, and it's a good way to make sure you are following the care plan.

If you are concerned with the way something is going, tell the provider! He or she can only help if he knows there is a problem.

Try to learn which staff members give different kinds of information. For example, "Who can tell me when my family member/friend will be discharged?"

Talk about any physical, emotional or financial problems the patient is having that may get in the way of his or her.

How can I help from a distance?

Here are 10 things you can do from a distance:

Help the person with cancer figure out how much care he or she will need. Determine whether he or she can stay at home. Your use the assessment on this site or this online Independent Living Assessment to help figure this out, and/or talk to the patient and his or her healthcare provider. If needed, look into in-home healthcare, in-home support services, and/or elder care.

Call members of the patient’s support group like neighbors, friends, or the patient’s faith community. Tell them what's going on. Make sure they know how to reach you.

Look into treatment options so that you can help the patient make decisions. If you have the patient’s permission, talk with his or her healthcare provider directly to be sure you understand the situation.

Check-in regularly with the patient to see how he or she is doing. Ask about side effects that might be troubling him or her, and talk about ways to deal with them.

Go over appointment schedules and transportation plans and help the patient troubleshoot if need be.

What should I prepare for?

People with cancer sometime have serious, even life-threatening, events. These can be caused by the disease or treatment. You are less likely to be surprised by emergencies if you’ve learned about the person’s illness, and know what to expect. You’re also less likely to be caught off guard if you stay in touch with the patient, and his or her healthcare providers.

How can I prepare for emergencies?

Make sure that the patient’s phone has important numbers on “speed dial," including 911, yourself, other family, friends and support people, healthcare providers, and neighbors.

Make sure the patient has an emergency travel pack ready with his or her medication list, insurance cards, identification, medial allergies, and emergency contact information. Include healthy snacks and water for both the patient and yourself.

Keep a list of important names and numbers handy. Include the patient’s healthcare providers (by role), home healthcare agencies, local caregivers, and the patient’s other family, friends, neighbors, or support people.

What if I live far away?

Make sure the people in your life know that you may have to leave on short notice, including your employer.

Have someone lined up in advance to care for children and pets, and take care of important household chores like the garden, mail, etc.

If you will be traveling by plane, know which airlines fly direct from your home to the patient’s area, and be aware that airlines sometimes give discounts for last minute travel due to medical emergencies.

If you will be driving, make sure your car is serviced regularly. Keep the gas tank mostly full. Keep a map in the car of the quickest route to the patient’s home and nearby hospital.

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This website was created to provide information, education, and support that will help cancer caregivers care for themselves and their family members. It is not meant as medical advice. Please check with your physician for any advice about your health.